Supporting patients and families through an incurable progressive lung disease

ALLENTOWN, Pa. (WPVI) -- When someone is diagnosed with a progressive ailment, medical care is only part of the equation.

Support for handling day-to-day living is just as important and that support can take many forms.

Anna Marie Bednar spent her working life for an airline.

"I started in reservations. I also loaded planes," Anna Marie says. "I was a flight attendant for 15 years."

When Anna Marie became short of breath in 2021, she felt sure of the cause.

"I thought I might have contracted COVID because my oxygen levels were low," she says, recalling she'd been out-of-state around people she didn't know.

But soon, she learned it was pulmonary fibrosis, an incurable progressive disease.

"Something triggers an injury of some sort in a person's lungs," Jennifer Wescoe explains. "The lungs become scarred."

Wescoe knows IPF well. She founded the Wescoe Foundation for Pulmonary Fibrosis after losing her father to it.

Throughout his struggle, he'd been frustrated by a lack of information and guidance.

"That's why we need the awareness and the information out there," Wescoe says.

The foundation keeps patients and families up-to-speed on research, medications, and therapy.

"I called and they sent me packets to help learn about the disease and to be able to work with it," Anna Marie says.

Through the Temple Lung Center, Anna Marie helped test a drug to slow down IPF.

And it recently won FDA approval.

The foundation and its support groups helped her cope with going onto oxygen.

"You know, it's not as scary, it is not as bad," says Anna Marie. "It's so helpful having other people to talk with about it. I can't say enough about the Wesco Foundation and Jen (Wescoe). If you need information, she will look it up, and try to find the information for you."

Wescoe says knowledge and connections empower patients and families. They believe in themselves.

Anna Marie admits she's slower with IPF, but she still loves travel, using her retiree flight benefits.

"I have a daughter down in Florida with granddaughters, and I have a son who's out in Kansas with two grandsons," she says. "On my bucket list, for next spring, I'm hoping to go to Machu Picchu."

Although the exact cause of pulmonary fibrosis isn't known, genetics may factor in for Anna Marie.

"I did have genetic testing and they found out that I have a mutation on one of the genes that can contribute to the IPF," she says.